Mum who gave up high powered job to care for autistic son with a related learning disability admits to feeling ‘outcast from society’
Ramya Kumar, 38, says she and her husband haven't been out as a couple for two years and she's worried she may develop social anxiety due to a lack of adult interaction
A MUM whose son has autism and a related learning disability has admitted to feeling 'outcast from society' after friends told her she couldn't bring her child to their house unless she kept him in the garden.
Ramya Kumar, 38, gave up her high powered banking job to become Rishi's full-time carer and believes people have distanced themselves from her family as her son's challenges makes them feel 'awkward'.
The married full-time mum is now concerned she may develop social anxiety as a result of having such limited adult contact - and admitted she and her husband haven't been out as a couple for nine years.
Ramya shares her story as Mencap, a UK charity for people with a learning disability, revealed 70 per cent of parents have felt unwelcome when out in public with their child with learning difficulties.
The organisation is calling on the public to be more accepting towards these children – to think and not judge and instead offer support to help end this isolation.
Ramya explained: "I don’t go anywhere – the best I could hope for is to go out and get my groceries, but even then there’s no human interaction really.
"You feel very sad and I sometimes feel I might develop social anxiety too because I’ve had absolutely no interaction with the outside world.
"I just don’t go out at all, I don’t want to bump into people as it gets very awkward because I’ve lost the way of speaking to people.
"I used to be a vice president with a multinational bank but I’ve lost the confidence now, I don’t want to face the world.
"We feel extremely isolated and outcast from society because I feel they don’t understand, or want to understand, my son and his challenges - they make people act awkwardly and drift away from us."
Rishi was officially diagnosed as being on the autistic spectrum when he was two-and-a-half, though Ramya said she knew something wasn’t right from about 18 months.
He needs full-time, one-to-one care as he finds it difficult to communicate and doesn't understand the dangers associated with everyday life, such as crossing the road.
The nine-year-old also struggles with busy environments like shopping centres and has to be prepared well in advance if he is to make a trip out.
Ramya explained much of her anxiety about taking Rishi places stems from an incident when he was two.
She recalled: "Our friends of five years, since before we had Rishi, invited us to their place for lunch.
"It was December-January time, peak winter, and he was about two - we hadn’t got his official diagnosis yet.
"The man of the family took Rishi to the garden and I thought they were just playing, and I was worried it was cold and I wanted to wrap him up.
"There was an incident where he had a little toy car and he ran near the television with it, so I grabbed him and pulled him back.
"I thought that was the end of it but when we got home there was a voicemail message to say that he’d damaged their TV and therefore we had to replace it, and if we were ever to go back to their house he had to either be left in the car or the garden. Rishi wasn’t allowed to come inside the house.
"Words can’t describe how it made me feel – at the time I was angry at the world because, to me, I was still dealing with this child who was differently-abled, and this felt like a slap in the face.
"That had such an impact that to this day I’m not comfortable going to anybody’s home – even at a close family member’s I’m constantly with him, holding his hand and I don’t let him go.
"I don’t want to go to anyone’s house in case they are like those people and they say something like that."
Ramya admitted she and partner Jay, 43, an engineer, haven't been out together just the two of them since Rishi was born.
She said: "My husband will say to me about a Christmas party and I’ll say, 'Well I can’t go, what about Rishi?'
"So it’s always one of us who goes, though that’s awkward because everybody goes with their partner.
"We don’t have family in this country either and we’ve got no friends really. It’s an extremely isolated world, especially now I’ve quit work to care for Rishi."
The couple have also decided not to have any more children, with Ramya reasoning as it would "put a lot of pressure on that child to care for Rishi".
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Ramya told how Rishi struggled at mainstream school so she decided to give up work and home-school him.
She explained: "He wasn’t himself at school, he didn’t want to go out of the house and he was extremely anxious.
"He doesn’t want unfamiliar faces and he wouldn’t display what he could do to everybody else. He reciprocated much better when I home-schooled him.
"It was pure learning, the way he wanted to learn, which gave much better results.
"It made sense to me, but obviously that’s taken a lot away from us as parents. I’m now his dedicated full-time carer, and educator, and therapist, and everything I do is at home with him."
But the stress of dealing with Rishi took its toll on Ramya's heath and she was diagnosed with lupus, a disease where the body's immune system mistakenly attacks healthy tissue in many parts of the body.
At that point Ramya and Jay made the call last year to send Rishi to a school for children with special needs.
Despite other kids being around him, Ramya said Rishi doesn't really have any friends.
She said: "Since he started school there are a couple of children whose name he knows, and they are very similar to him.
"They are aware of each other and that’s the friendship.
"The biggest worry I have is what will happen to him after us. You just have to take one day at a time.
"He is my responsibility completely and you become his advocate because he can’t speak for himself.
"If I’m not there his life would fall apart. The liability and the duty drives me to keep going, even if my own health fails."
Ramya is not alone...
A recent study by Mencap, a UK charity for people with a learning disability, revealed 70 per cent of parents have felt unwelcome when out in public with their child.
It also found 63 per cent miss social engagements due to fear of public reactions to their son or daughter, while 21 per cent have been asked to leave a public place because of behaviour resulting from their child's learning disability.
Shockingly, 41 per cent said they feel other parents are somewhat or very unhappy for their child to spend time with their children, while half think public attitudes towards children with a learning disability are negative.
On the upside, 43 per cent of parents asked believe attitudes towards people with a learning disability have improved.
Mencap is calling on the public to be more accepting towards children with a learning disability – to think and not judge and instead offer support to help end this isolation.
For parents of children with a learning disability who are suffering a new online community has been set up offering peer-to-peer support for parents.
Mencap carried out an online survey of more than 1,000 parents with a learning disability between August and November 2016.
Rossanna Trudgian, Head of Campaigns at Mencap, said: “Public attitudes may have improved in the 70 years Mencap has existed, but as a society we should feel ashamed to have such little acceptance to children who may sometimes act differently to others.
"It’s heart-breaking that not only are children with a learning disability being dropped off birthday invite lists or being asked to stay in the garden away from other children, but almost a third of parents have felt forced to miss social engagements, such as their best friend’s wedding.
"The good news is that solving this can be easy, inexpensive and life-changing for parents.
"If the public can think and not judge when they see a child behaving differently and instead offer support and acceptance this suffering could end overnight.
"Parents who dedicate their life to the love of their children shouldn’t have to feel the constant need to apologise if they are different.
"There’s a lot of confusion around learning disability, but gaining a bit more understanding could change the lives of parents who have said in such large numbers that they are in need of help.
"For anyone worried about how to react around children with a learning disability, we urge people to pause and realise it’s OK to feel awkward, but to still engage and help end this isolation so many parents are feeling."
Earlier this week we told how a dad's heartfelt appeal on social media for strangers to help him find a replica of his autistic son’s Tommee Tippee cup prompted the baby product firm to manufacture a special batch just for him.